Sunday, June 10, 2007

It's out again ...


and I'm just sitting here crying.    I don't know why I'm feeling so overwhelmed by this right now - but I am.

It was her tube that was clogged again. This time I was sure. I gave her med (which I think is what clogged the tube as it was a powder dissolved in water - though not very well no matter what I did). Afterwards I tried to feed her and started getting "flow errors" from the pump right away. I did a quick check of the pump then decided to try to flush water down her tube. It wouldn't go at all. I kept pushing it and finally the syringe just popped off spraying the water everywhere.

I had no choice but to remove it. I'm not sure how soon I can put it back in. I tried to flush the tube once I had removed it - and couldn't then either. She cried and cried as I removed the tape. She has red marks from the tape even though I was as gentle as I could be in removing it.

Just feeling overwhelmed right now. Earlier today I thought I'd look at painting a room in the house. I thought it might be fun to do something that was not serious and thought that the color would cheer me up. I even felt frivilous in thinking about it - something I haven't had the freedom/time to do in what seems like a long time.  Feeling slapped back to reality pretty quickly.

Not meaning to have a pity party over here. It's not that big a thing - it's just one more thing and I'm feeling spent.

We visit the cardiologist tomorrow (Monday) and her ped wants a phone call after the visit. I'm guessing we'll start talking about surgery again.   We just can't keep putting this in over and over and over. 

I feel like I've rambled a bit now. Just feeling sad. My sweet Rebecca has been trying to cheer me up with hugs. I have so much to be thankful for - I really do. I know God is with me.  I know that He loves me.  I know that I have not been forsaken.  I know that things will work out. At this moment though I'm just Thank you for your prayers.

ETA:  It's 1:30am now.  I'm up with Eliana while she is getting her last feeding of the day.  Her schedule was thrown off when we went to church this morning.  Which was a nice time and not hard at all.  We didn't see many people there.  And then it was thrown off again when she had some by bottle and coudn't finish the feed.  She ended up missing the rest of that fed - or I would be up all night trying to fit them back in.  (I can't reinsert the tube for at least an hour after it's come out and she has eaten or she may get sick.   Highly likely given how hard it is to get it in.)

I can see in her tube and it is definitely the prevacid that clogged it up.  In more than one place - though mainly a big chunk in one section.  I tried dissolving the tablet in room temp water - by putting the table into the water, as well as adding water to the tablet.  The directions say not to crush, though I did stir.  I also tried shaking it when I added it to the syringe.  I couldn't think of any other options to try at the time.

Her tube is in.  As usual lately, it was tough to get it in.  It just gets stuck on her gag reflex - over and over again.  :cry:  My friend Rebecca helped this time.  She was calm, but I don't think it was easy for her either, especially when Eliana gets to crying.

Thank you dear friends for your notes and your prayers.  I am deeply blessed in so many ways!  Trying to go now and respond to your sweet comments.
With love,


Leslie

10 comments:

  1. Dear, Dear Leslie,


    Methinks Eliana's ped should read your blog entries, so she knows the full extent of what you're going through!! I do believe God is speaking through Beth ((above post)) and through your new friends from the T21 boards. I am hearing your emotional anguish, and I believe your suffering is greater than Eliana's temporary pain. You need relief from this torment! And it sounds like the G tube will provide that relief for you and for Eliana. Let's praise God that He has given doctors the knowledge and skill to mend tiny hearts AND to provide alternative feeding routes! It must be that Eliana has even more hearts to touch, more doctors and nurses who will fall in love with her! And you and Roger will have more opportunities to speak of the love and grace of God to those He brings across your path.


    When Justin was in the hospital, I promised God that I would speak of Him every chance I got. I was able to bring Him into numerous conversations, not in an obnoxious or pushy way, but just giving Him glory.


    What you are doing for me is teaching me how to be and intercessor and pray without ceasing!! I hope you can feel the combined strength of all the prayers of the body of Christ that are rising up to the throne of grace for you. You are loved!!


    Love,

    Anna

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  2. Thank you for your encouragment and advice. I have not yet checked to see if we can get this in another form. I thought I'd ask her ped tomorrow when we talk. She is just taking it once per day and I've been giving it around 6pm.


    Thank you for sharing about the Gtube. It does help to hear from folks that understand more about it. In some ways it just feels like we've failed to pass another test. I guess I was hoping that once her heart was repaired that she could just eat/drink all of her food from the bottle again.


    I need to go do some research on the Gtube. Actually, I'm hoping I'll learn more tomorrow when we meet with the cardiologist. I'll post more as I know it.


    Love,

    Leslie


    PS I think we have one of your jewelry tools here. Sorry I haven't mentioned it before now.

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  3. Leslie,


    When Connor was a baby the ONLY way I could get any medication in him was with a medibottle. http://www.medibottle.com/ I know this might be harder for you because she isn't taking that much by bottle but I really do not know what I would have done without this bottle. I purchased mine at a local pharmacy.


    Continued prayers and hugs...


    Love, Karen

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  4. Hi Leslie, I am Cynthia...Karen from T21 sent me over here. Just breifly read bits here and there.I have 3 children. Two have g-tubes and one is finally g-tube free:)) We have dealts with lots of NG tubes.

    I can tell you the prevacid comes in liquid form but does not work as well as soltabs. The trick with the tabs is to soak with warm water and let sit for about 5-10 mins and when you push the meds through the tube to rock the syringe back and fourth so the balls won't all go through at the same time. Then be sure to flush with lukewarm water to push all the beads through. My youngest has a J tube and we have had same issues...finally playing around and taking chances figured out how to do it.


    Also I have a feeding club at yahoo if you like to join... go to http://health.groups.yahoo.com/group/feeding_g-tubes/ you can join in on us!


    You like you can email me private at cmedrano@mchsi.com


    Cynthia

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  5. I'm so sorry you're struggling with this so much!

    Praying...for peace as you approach the future.

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  6. Sweet Leslie ~ My thoughts turn to you so often, and I pray for whatever needs you're facing. I know that in addition to your sweet Eliana's feeding difficulties, you have much weighing on your heart. Oh, how I'm praying that your heavenly Daddy comforts and quiets your heart with His love. May He be the lifter of your head, dear one...

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  7. Michael was on Zantac when he had the ng tube. We were switched to Prevacid when he was not using the tube anymore because Zantac has an awful taste. I was really worried about having to give him meds by mouth when he was just beginning to do well with eating. I certainly didn't want to give him something with a bad taste. It sounds like your little one takes some by mouth. Would she take Prevacid oraly from a syringe or mixed in food to avoid clogging the tube? Probably a silly question on my part but just in case here is how I give Prevacid now. To give with a syringe, I place the solutab in syringe after I break it in half. I crush it with plunger then draw water into syringe and shake for a while. My other method is to dissolve in tiny bit of water and mix in yogurt. The tiny beads prevacid is made up of are tricky to work with. They will stick to anything and I could definitely see them clogging a tube. Michael also has silent reflux and never really shows symptoms but becomes reluctant to eat if we stop the med.


    I know this is a very stressful time. I was very lucky that Michael did not pull his tube out. I can't even imagine having to put it back in so often. You must be a true expert at it! I will keep you and your family in my prayers. Eliana is absolutely beautiful! Her little face just makes me smile.


    Barb bsherman@cri-search.com

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  8. My heart just aches for you, Leslie. You are doing a great job with Eliana's care, and I know there are many times you feel overwhelmed with it all. I will be praying that the doctor's are able to help you decide the best course of treatment for her reflux. We used Zantac for 4 babies, and it is strong tasting stuff. It is in a liquid form though, and it might go through the tube easily. Maybe they will have something else to suggest.


    Love, Tami

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  9. Leslie,


    I am late seeing this, but my heart goes out to you!

    About the med, can you mix it with a little formula instead of water? Ask if it is fat soluble(?). Eli takes a med that is a tablet and has to be dissolved. It will not melt in water-stays grainy, but was/is fine in formula/milk.


    This IS a big deal. It's hard. I will be praying for you all!!!


    Love ya,

    Lisalyn

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  10. Hi Leslie, I am so sorry this is a problem. My girls used Zantac with success. In fact Lea is still on it at 4. We got something that began with a p, priolosec, prevacid, compounded at the Duke Children's pharmacy. It can in a liquid just like zantac did. Of course that was a couple of years ago. The zantac is really not that bad. I have tasted it myself to see if we should get off of it. Your OT/ST should be able to help you with getting her to take it orally also. I would ask around locally about STs. We had an amazing OT and a pretty good ST. We saw three bad to close to bad ST's before finding the one we did see. The one we like did come to our house. I hope this all works out soon for you. I remember when my girls took a bottle for a full feed. I am praying for you both.

    Lisa (from MOMYS)

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